Withholding of treatment of infants with disabilities

The ability to provide life support to ill children who, not long ago, would have died despite medicine’s best efforts challenges paediatricians and families to address profound moral questions. The society of today is divided about extending the life of some patients, especially newborns and older infants with severe disabilities. This report will look at previous cases of such episodes, and aim to discuss the areas of legal and ethical issues that surround them. Medicines can influence the way we live in a variety of ways.

Some can be clear to understand, yet others may be more subtle, and difficult to understand. Medical advances have often raised moral and ethical issues. The problems posed are often complex, especially when considering what should be done or not done in respect of infants born with severe disabilities. The issue has been evident for many years, but it has also changed over the years. Selective non-treatment of newborns retains its unique features. It concerns human beings who are at the most vulnerable period of their lives, who cannot express their feelings.

Although there are several methods available for the diagnosis of chromosomal, genetic and physical disorders of a foetus, many can go undetected for the full term of pregnancy. Had they been detected early on in the pregnancy, prophylactic termination would have certainly been discussed with both parents. Advances in neonatal medicine mean that infants born of low weight or with disabilities may now be saved, whereas some years ago they would certainly have died. The question that stems from this issue is that of ethics and law, and who has the authority to make the decision of withholding of treatments.

In the past, doctors dealt with severe cases. Campbell and Duff (1979) believe that traditionally doctors have often made a decision for or against treatment, without any reference to parental views. These decisions, often well meant, had a mistaken belief that parents were spared an unbearable additional burden. The doctors dilemma is evident, do they maintain the life of an infant who will not be able to take an active part in society, or who will experience pain and suffering throughout life. Smith (1986, p.765) points out, “Although generally considered unlawful, non-treatment of disabled newborns is probably not a rare event”.

Smith claims that results from one hospital study show that 14% of all infant deaths were closely related to withdrawal or withholding of medical treatment. Shapiro (1983) estimated that in United States approximately 30,000 severely defective babies are born each year. This occurs despite the sophisticated screening programmes. Once born, choices have been, and are, made about which should be treated and which not.

These decisions may be based on a number of factors – personal, ethical or economic. The decisions are made despite the fact that there are treatments available, which would maintain life. Mason and McCall Smith (1994) state that at the Court of Appeal in Re B, was a case concerning an infant suffering from Down’s Syndrome further complicated by intestinal obstruction of a type which would be fatal, but which was amenable to surgical treatment. Parents of child B took the view that the kindest thing in the interest of the child would be for her not to have the operation and for her to die.

Judge Dunn LJ in passing described the decision as ‘an entirely responsible one’. Mason and McCall Smith (1994, p. 150) state that the “Infant was made a ward of court and, in the face of judicial indecision and medical disagreement, the question ‘to treat or not to treat? ‘ came before the Court of Appeal”. A second judge, Templeman LJ, adhered to the general principles relating to the affairs of minors, believed that the judge Dunn LJ, who firstly dealt with the case, had been too much concerned with the wishes of the parents, when he had refused to authorise the operation.

Templeman believed the duty of the court was to decide the matter in the interest of the child. His conclusion was that in the best interest of the child the treatment should be served. Although, Templeman LJ left room for manoeuvre in his decision, and said that with regards to other cases, the court may be forced to give another conclusion. The times when the infant has such severe and proved damage that its future is so certain, and also when the life of the child is going to be full of pain and suffering then the courts may see fit to rule differently.

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